The Chronic Diaries: Life Filtered Through Leukemia

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11/1/15 Major Milestone Behind Me Now

A full seven years ago now that October has passed, I was sitting in Hemosapien‘s office, apprehensive, fearful, and more than a bit disbelieving that it was actually me as a patient waiting for a consultation with an oncologist. The universe was apparently mistaken, as this could not possibly be right. Cancer was something that happened to others. It was not supposed to happen to me.

Seven years ago, early in October of 2008, it had been pretty much determined that I had leukemia, but I was waiting for the confirmation, the official test result confirmation, not only of the leukemia, but of the actual type and sub-type, and the stage thereof. There are far more types and sub-types than there are stages. Stages are l, ll, lll, lV, and V (dead). I was certain I was not a stage V, but not so sure about stage lV. Thus, I waited. Debbie waited with me, but even though she was by my side, I’ll have to admit that it is a very lonesome wait. Still, I was thankful to have her with me – more than thankful.

Hemosapien came into the room, all fresh out of serving his residency, fresh in the practice of oncology, no longer a student, but a fellow of his art and a peer. With all his training, he was still quite new at breaking bad news to people, somewhat unsure of himself, a bit hesitant. He is a nice man – a kind man – one who has a job that requires the heart of a servant, for it is an awful job as far as I can determine: grief, pain, misery, and death occasionally dotted with moments of great victory, joy, and triumph of the human body and the human spirit. He was yet young and filled with promise, even if he was not quite yet filled with comforting authority. Maybe we never are. Maybe comforting authority is just an illusion we can put on from time to time, like the costumes so many wore last night.

If comforting authority was a costume, Hemosapien had forgotten to put his on that day. Maybe though, I had left my usual comforting authority at home, too — you know, that authority I exude that is its own illusion, the illusion that I am actually in charge, that the world is my oyster, that I say things and people jump, fetch, and yield…which is pretty much how I viewed myself because it is not completely untrue. All that failed me now, though it failed Hemosapien, too. We were both failing at this, but determined to muddle through. Awkward is too mild a word.

He walked into the room in a rush that afternoon, as if he had taken a deep breath and told himself, “Let’s get this over with.” This was the part of the job he probably enjoyed the least. I can be candid and say that I didn’t particularly enjoy it either. Neither of us knew how to act, he nor I. He probably wondered what my reaction would be nearly as much as I wondered what he was going to confirm and what he might say of my prognosis, even as I wondered what my reaction would be, too. Would I be manly? I hoped so. I hated to think I could be otherwise.

I was seated in a chair in his office, Debbie beside me. I stood up when he walked into the room. We shook hands.

“Have a seat,” he said.

“Nope. I want to be standing when you tell me whatever you have to tell me. I will not be sitting when I hear whatever it is that I will hear,” I replied, vivid memories of him looking at me in the most curious manner, peering into my eyes, trying to determine in advance what may be in there. I did not flinch, remaining at attention.

He then confirmed that I was Stage lll Chronic Lymphocytic Leukemia. The things I have learned about CLL since then were not available to me before hand, or rather, they were available to me, but I was not available to them, since I had no interest in CLL whatsoever, and was still mistakenly thinking I was somewhat immortal, the foolish invincibility of youth not having completely abandoned me at that time, though I was over 50. I was fortunate that a remnant of my youth was as stubbornly tenacious as it was, giving time for some degree of maturity to develop before it finally tossed me aside, looking for greener pastures as I received Hemosapien’s report, the last sliver of youth tossing its head, hair blowing in the wind, throwing back one last coy smile as it flew out the door upon hearing that I had a cancer that mostly affected the elderly.

Hmmmmm! I am not sure which was worse. Now that I have looked at it in this manner, with the benefit of much hindsight, I suppose I may have been as sorry over witnessing the vanishing of the last vestige of my illusion of youth, waltzing out the door in search of that lush grass, than I was at the confirmation of every bit of bad news Hemosapien had to impart. It was not a good day. That there were dozens of apprehensions on my mind, all somewhat malignant I might add, should be apparent to the reader by now. If you have been the patient, or accompanied a loved one who was the patient, you understand exactly what I am talking about.

After Hemosapien’s confirmation of diagnosis, I turned to the next inevitability. “What is my prognosis?” I asked.

Here, it got even more awkward. A cancer diagnosis is no longer an immediate death sentence most of the time, nearly all of the time, though it seems so at the moment you are getting your own cancer confirmed. The instant one hears the diagnosis, the looming and swelling thought is, “How long do I have left?” That’s a tough question because there is no realistic answer.

“You mean to ask me how long do you have left because of your own very personal genetic anomaly/malignancy in your own body?” would be a perfectly legitimate question an oncologist who also happened to be a complete clod might ask in retort. There is no real answer because how long one might have left depends on the course of the cancer, our body’s reaction to it, our response to treatment, our successful navigation of complications, secondary infections, even secondary cancers…versus the very real prospect, however remote the probability, of getting trapped in a malfunctioning elevator door and suffering a fatal injury upon our exit from the doctor’s office, or the much more likely fatality we might encounter on our drive home. How long we have left is not something a healthy person reflects on very much, only the fearful, the anxious, like those who have just received a cancer diagnosis confirmation. That was me at that time. I wanted assurances. I didn’t get any. I am still wanting them. I still ain’t gettin’ none, though I have learned to live without them.

Hemosapien, had a chart in his hand. Without saying a word he pointed to it. Stage lll, CLL, with a genetic karotype like mine….seven years it said. Seven years.

“Seven years!” I said back, more to the chart than to Hemosapien.

Seven years is a whole lifetime away, I thought to myself, glaring at Hemopsapien as though he was my enemy, as though he was the one who was doing this to me. Earlier I implied that Hemosapien still had much to learn when I first was unfortunately forced to make his acquaintance, but I was literally swimming in ignorance, disbelief, and general rebellion. Here, right in front of me,was the man who was taking my life away. I do not doubt that this is a common reaction of a brand-new cancer patient, and further do not doubt that Hemosapien had been trained that I would likely and defiantly respond this way, that any patient might respond this way. He was not an enemy I had unfortunately encountered. He was an ally, and later to become a friend, who would help me face and keep at bay a formidable foe. We all learn as we go through our life-long on-the-job-training exercise. I have learned a lot, even more than Hemosapien, though he has learned a lot in the last seven years, too.

In seven years, he has told many others that their cancers were far more urgent and malevolent than mine. He has had patients with advanced melanoma that have died within days of getting their diagnosis. He has had two, not one, but two cousins of mine, close friends and family, as patients who had advanced pancreatic cancer. We have buried both of them. He has had many others and deals with deadly cancers every day. I deal with a cancer every day, too, but only one…and I hope it stays that way, just one, mine, my personal one.

At that time, though, seven years was both a death sentence and a reprieve.

“I’ll think about it tomorrow,” Scarlett said to the setting sun in the twilight from the ruins of Tara. Since then, I have had a lot of tomorrows. I think about it some, and sometimes I think about it a lot, much as I have done for the past month. This month immediately past, this October ended just yesterday, was the month that should have claimed me, the one that should have been my last one on earth, at least according to Hemosapien’s chart. Since originally showing me the chart, I suppose it has been retired in favor of a newer one that reflects the advances in treatment for CLL, of which there have been many and substantial. After this initial viewing, I subsequently saw charts based on additional genetic testing that indicated I would have substantially less that the seven years Hemosapien first prognosticated. If you are a CLL patient, you probably know what Unmutated IgVH means. If you are unmutated, too, then you know exactly what I mean. If you don’t know, then you should immediately click on the provided link above and acknowledge your mutated status if so and rejoice in your mutation, for mutated is far better.

By the time I got the unmutated news, I was no longer a virgin, having lost my virginal idealism to a worldly cancer savvy, knowing that statistics and probabilities are just that, and that I was one and would remain one, but where I would fit in those numbers was not fixed by former studies and charts, nor to be yet confirmed by studies and charts that would be conducted and prepared in the future, though it may be fixed by the heavens unless I could change it, modify it, ameliorate it without circumventing it entirely, or none of the above, which was most likely, but disconcerting to think about.

“Seven years,” I sneered. “I’ll show you,” I thought to myself as I left Hemosapien’s office, vibrating with morbid expectations, but defiant, ready to fight anything in my path, and anything but resigned, as I am somewhat aggressive by natural inclination, well…OK…more than somewhat, being bent strongly in that direction like a tall oak tree leaning haphazardly over a power line. I was resignation’s inverse, its inverse squared, its inverse cubed. I was determined to be its Avogadro’s number inverse…a factor of -6.02×10(+23). The Lord had not given me a spirit of fear, but of love and a sound mind. This was my mantra. This was the promise I could claim, since time never has been, nor ever was mine to claim, never was mine to hoard, extend, or curtail, since this is beyond us. We take what we can get. We do with it what we can.

So this was on my mind all this immediate October past: a couple of days of unexplained fever, unexplained nausea, a cut, or two, or three, that grew puffy and red threatening infection, various and sundry other chronic things that have collected on this CLL patient that rear their head from time to time reminding you that while today may be a good day, things are not at all just fine, as complications gather much like fire ants gather to devour a fat grub worm, nipping away until there is no grub worm left, just an empty, un-molted shell.. Every day in October reminded me that this was the month I was supposed to die, the expiration of my seven year period, the month Hemosapien’s chart said would do me in.

It is behind me now. I made it, though every day, every degree of fever day, every sniffle, every cough had me thinking, like Fred Sanford, that this was perhaps the big one. I knew better, but that didn’t matter, I felt that way anyway. In spite of that, I lived my life, did my work, interacted with other human beings, cried, laughed, won, lost, wrote, sang, enjoyed the passage of time, enjoyed nearly every minute of my work, played music, read, had fretful moments obliterated by much longer periods of care-free abandon, loved and was loved. I lived all the way through it, this October of 2015.

The last seven years? I have had new grandchildren born and watched them grow, made a whole continent of wonderful new friends, wrote new songs, wrote thousands of pages in this blog, watched my own children mature and become more and more like me, which I might add has no small degree of satisfaction, as it were, seeing my legacy to the world right before my eyes. In seven years, I have lived and lived well as entire nations were ripped apart. I am fully aware of the blessings I have had while under the spell of cancer, and in spite of it — maybe even because of it.

This is the way one must life one’s life with cancer. It is the way one must live one’s life without cancer. I have lived an entire lifetime in the past seven years, not with a focused dwelling on the cancer that smolders inside me, thankful for the smolder and not an out-of-control flame which must eventually come, must eventually be fueled and fanned. It seems like a lifetime ago that I got the news from Hemosapien. It is even a further lifetime ago that it seems I could have been so foolish as to view him as an enemy, for he is anything but.

I am still here. Many are not. Others were perhaps shown charts that were less kind than the one shown to me that I thought was so unkind at the time. Others have departed, their chemotherapies failed, their surgeries failed, their bodies failed. We have their memories, not their presence. I am still still here, suffering from time to time from survivor’s guilt, which is a legitimate phenomenon, much like the animosity and enmity one directs towards one’s oncologist who presents them with bad news.

I am entering my second seven year period as of today. Seven years from now, I plan on writing to tell you exactly what I have been thinking for the past seven years. I might be. I could be. I am expecting to be. But I don’t know, for I very well may not be. We never know. All we know is that we have this moment, and we are in the middle of it, and dare not waste it. I can truthfully say that no moment spent in writing about this has been wasted, as the writing is a cathartic that causes nearly, and I said nearly, all the angst to vanish, sublimating like dry-ice, from a stone-hard tangibility directly to an invisible gas dispersing into the atmosphere without a trace, invisible, odorless, tasteless. It subsides like storm-tides borne on an ill wind, the wind rushing, anxious to get to its destination, perhaps never thinking, if the wind could think, about what it will do when it gets there and what all the rush was about, and the tide returning to the level from which it came, as slowly as it rose, meandering, with perhaps much less purpose than the wind which drove it.

I think about all these things. I have thought about them more so after my remission failed last year. I really thought about them a lot this October.

I think I’ll start a new chapter. It is November, now, the month of Thanksgiving. I will take that as my cue. I suppose that I was waiting for October to pass to be really thankful. That was a complete squander of time, that waiting. I can be thankful every day.

The passing of a major milestone reminds me that a milestone is but a marker along the path to a destination. In the case of an incurable cancer, the destination is not a pleasant one, not like a lazy creek-side picnic on a sunny Sunday afternoon. Once past, a new milestone is set, or is soon revealed, and we begin working our way towards it, whether by choice or by circumstance, either way, headed surely towards it. It can be a victory, or a defeat…we have no way of knowing which it might be…but to focus on the destination is to neglect the time spent on the journey, which is a shameful waste of a precious resource.

And the journey? Well, it’s nice to have an experienced, professional travel-guide/companion that is in it with you through thick and thin. Thanks, Hemosapien, for being that companion; if we are ever so unlucky, we should all be so lucky.